Our Story

     Our food allergy story is a part of our family’s bigger story.   I would love to share the whole story with you, so grab a cup of coffee and join me.
     As each November rolls around, I find my thoughts drifting back to 2005, just seven years ago.  It seems perfectly fitting for me to share Our Story with you during the month of November.  With Thanksgiving around the corner, our hearts begin to reflect on all we are thankful for.  I am thankful for my family.  
     Seven years ago, we were expecting our second baby. Our son, Noah, had just turned two and he was going to get to become a big brother.  Would it be a boy or a girl?   What would his or her name be?  Would they have blond curly hair like Noah’s?  We were so excited to welcome this new little one into our family.
     When I went in for my 16 week appointment, my doctor asked if my dates could be off.  I told her there was no way, I was absolutely certain of our dates.  She asked me to come back later that week to get an ultrasound.  I had a suspicion of what she was thinking, and suggested "how about if I come back later today for the ultrasound?"  The idea of waiting and wondering for several days did not sound fun.  Thankfully, they scheduled me to come back in that afternoon.  I called my husband, Dan, and told him I needed to have an ultrasound to "check my dates.”  I tried to make it sound like it was no big deal so as not to alarm him.  I was really trying to convince myself that this was no big dealDan caught me off guard when he said he was going to leave work and would be there in a little bit for the ultrasound.  Noah and I went back to the doctor’s that afternoon for the ultrasound.  After getting situated on the table, the ultrasound tech said, "There's the heart beating...and there's another one."  I was speechless.  Was this really happening?  Talk about a surreal moment.  Two babies?!  There was a knock on the door.  It was Dan.  I was in shock, so I asked the tech to tell him.  She showed him the heart beating and then the other one as well.  Dan’s jaw dropped. 
     During the next 4 weeks, we shared the news with family and friends, while I tried to process the news for myself.  The idea of twins had always scared me.  I didn’t think I could handle it.  Twins sounded overwhelming.  I am a person who enjoys quiet, peace, order, organization and control. You know the kind.  I like my towels all folded in the same direction, the dishwasher loaded a certain way, my closet organized by length of sleeve and color all on white hangers.  I knew my world was about to be turned upside down.  I was going to have to let go of striving for a neat, organized house.  Little did I know, just how much stretching God had in store for me.  A season of growing and trusting was on the horizon.  It took a LOT of soaking in.
     With our first pregnancy, we did not want to know if we were having a boy or a girl because I love surprises.  We decided to wait.  I thought of it like, not wanting to open a Christmas present until Christmas morning.  However, after finding out we were going to have twins, we decided that was enough of a surprise and now we wanted to know their gender.  So at my regular 20 week ultrasound appointment, we found out we were having 2 girls! My OB proceeded to tell us we needed to go to see a specialist, a perinatologist, because there were some concerns about their size discrepancies. 
     Off we went to meet with the perinatologist.  As the doctor sat so seriously behind his desk, he told us our babies had Twin to Twin Transfusion Syndrome (TTTS), a rare syndrome that occurs in less than 0.1-0.9  in 1,000 births.  The prognosis was poor since it presented itself so early in the pregnancy.  The doctors were going to do their best but admitted that there is still so much to TTTS that they do not understand.  I was to go on bedrest from here on out and they would monitor the girls weekly.  The appointment was somber.  I went from feelings of shock, to begging God to save both of our little girls.
   If you would like to learn more about TTTS, click on the links below.  http://www.tttsfoundation.org/medical_professionals/what_is_ttts.php or http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002562/   

These photos are of Baby A.  Baby B always hid from the camera.
Noah named our girls Peek and Boo.
     With the diagnosis of Twin to Twin Transfusion Syndrome (TTTS) at 20 weeks, I was put on bedrest.  My parents drove up from Kansas so my Mom could move in to help us.  My husband so graciously supported me in what I needed, including wanting my Mom by my side.  Thankfully, they have a great relationship.  Mom helped with so many things.  She took care of Noah (2 years old), did laundry, cooked, cleaned, grocery shopped, and even sent Dan off to work with breakfast and lunch (which I'm sure he thought was quite a treat since I don't do that). 
     I wondered how on earth I was going to be able to handle laying on the couch all day every day (minus doctor appointments).  As a mom of a toddler boy, I was used to running around all day. Somehow just knowing that it was "my job" to keep my 20 week old girls safe helped me to stay down, even despite the aching bursitis in my hips.  The health and safety of our little girls was completely out of my control but this was the one thing I could do to help them.  Noah, who was always quite independent, quickly became a snuggler and wanted to do his activities near Mom.  It's amazing how little ones can sense when something is wrong.  We spent a lot of time together by the couch coloring, reading books, doing puzzles, listening to music and watching movies.
     Our babies had their own amniotic sacs but shared one placenta.  Their blood vessels in the placenta were connected, transfusing fluids between the two babies, unequally.  Baby "A" was referred to as the recipient twin  because she had too much fluid in her sac, which caused pressure on her heart.  Baby "B" was referred to as the donor twin, she had very little fluid in her sac, thus had difficulty growing.  The earlier you develop TTTS in your pregnancy, the worse your chances of survival or healthy babies.  Getting diagnosed at 20 weeks is considered early and made their odds of survival slim.
     After getting diagnosed, I hit the computer hard.  Researching as much as I could about TTTS.  I had heard of it before and seen babies diagnosed late in pregnancy, while I worked as an RN, in a Special Care Nursery.  The mama nurse in me was on a mission to understand TTTS the best I could.   Many family and friends brought meals over including my sweet co-workers who faithfully brought meals twice a week and would often stay to visit.  Their faithfulness, endurance and thoughtfulness showed me the love of my heavenly father in such a tangible way.  Noah was always eager to greet them at the door, with guitar in hand and sing them some of his favorite songs like, "Indescribable" by Chris Tomlin or "Marvelous Light" by Charlie Hall.  I'll never forget him standing by the door, strumming his guitar that was as big as he was and singing such big words, with no reservations.


     When I found out I was pregnant with Noah, our first pregnancy, I was really fearful of a miscarriage.  But God impressed on me how much He loved my baby, even more than I ever could.  This baby was ultimately His.  That my husband and I get to care for and love God's precious child for whatever amount of time He gives us.  Even if we never get to see his or her sweet face.  We never know how long we will have with our children.  But we can trust in God's good and perfect love for them.  This truth during Noah's pregnancy was preparing me for this season.  
     Appointments went from a couple times a week, to daily ultrasounds and then weekly echocardiograms with the pediatric cardiologist to monitor Baby A's heart.  With each appointment we went in for, we didn't know if our babies would still be alive.
     God poured out his love and peace to me with timely verses about how he never changes.  He is the great I am.  He is the same God who led Moses and the Israelites across the parted sea on dry land.  He is the same God who protected Daniel from the mouths of lions.  He is the same God who instructed Noah to build an ark even when rain had never fallen from the sky before.  He is the same God that fufilled his promise to Abraham and gave him a son, even though it seemed impossible due to their old age.  He is the same God who sent His only son to rescue us by coming into our sinful world to fulfill the Old Testament scriptures.  He was born of the virgin, Mary and to be called Immanuel, which means "God with us."  He suffered great pain for us and our sins.  He died on a cross and rose 3 days later.  He is that same God today, in this moment, and in tomorrow with whatever may come.  He will never leave us.  He is always with us.
     At 26 weeks, we had our second amnio reduction done.  During an amnio reduction, the doctor goes into the amniotic sac with a long needle to remove the excess fluid.  Removing the fluid is an attempt to control the excess fluid in Baby A's sac which would hopefully help relieve some of the pressure on her heart.  Baby A was showing tricuspid regurgitation, a beginning sign of heart failure.  Baby B was showing some absent end diastolic flow, where the blood flow through her umbilical cord would basically stop coming to her.   Unfortunately, the fluid removal during the amnio reduction did not help enough.  Our doctor referred us, out of state, to one of four fetal surgeons in the US, to look into a surgical treatment option. 
     It was the Sunday before Thanksgiving, I was 26 weeks pregnant and Dan and I were getting on a flight to meet with a Fetal Surgeon and his team.  I usually love flying and staying in hotels, but this was not a trip to look forward to.
     The next morning, we were greeted by a wonderful nurse, who helped us walk through our full day of tests.  At the end of the day, we met with the Fetal Surgeon, Neonatologist, Pediatric Cardiologist, Radiologist and several more team members in a conference room where they presented to us the results of what was happening to our little girls.  They explained that TTTS is categorized into stages 1, 2, 3A, 3B, 3C and 4.  The fourth stage was the demise of either baby.  Our girls were in stage 3A.   The option was to do Fetal Laser Surgery to basically disconnect the blood vessels in the placenta that were connected to each other, thus stopping the TTTS.   However, because I was 26 weeks along, they would not be able to perform the surgery if we waited any longer.  If we proceeded, there was only a 50/50 chance that both girls would survive.  The laid it all on the table then told us the decision was ours to make.  So there we were faced with the hardest decision of our lives and we had to decide then and there.
     After asking a few more questions, to make sure we understood everything the best we could, we decided to not do the surgery.  We would continue the pregnancy with close monitoring including ultrasounds each day, echocardiograms weekly and aggressive amnio reductions as needed and leaving our girl’s future in our loving, powerful God’s hands.  We hoped for being able to make it another 2 to 4 weeks before delivery.  
     We flew home from Cincinnati, celebrated Thanksgiving, still on bedrest, then I was admitted to the hospital on bedrest to keep a really close eye on our babies.  I was surprised at just how difficult it was to be hospitalized, on bedrest.  I got so sad being away from my family.  I felt like I wasn't able to a a Mom to my little boy and missed him so much, plus it was Christmas time.  Thankfully, after a couple of weeks, my doctor decided I could go home.  My Dad came back to town and was willing to drive me to my appointments every day while I promised to stay on strict bedrest.  It did my heart such good to be home again.
     As a little girl Psalm 23 seemed so mysterious, I suppose I read it quite literally as a child.  I was listening to a Beth Moore teaching on this verse, called The Lord is My Shepherd, and finally deeply understood the meaning.  Here we were walking through our own valley of the shadow of death. 

"The Lord is my sheperd, I shall not be in want.  He makes me lie down in green pastures, he leads me beside quiet waters, he restores my soul. He guides me in paths of righteousness for his name's sake.  Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me."

     He was with us.  He is with you too.  Trust in His deep, deep love for you.  Trust in His goodness despite your current circumstance.     
     At 31 4/7 weeks, the cardiologist recommended our babies be delivered.  The recipient’s heart wall was continuing to thicken.  Delivery day was scheduled for 32 weeks.  We were excited, grateful to have gotten so far along, and nervous to meet our little girls, not knowing what would lay ahead of them in the Neonatal ICU (NICU).
     Here is a portion of an email my husband sent out.  Dan wrote, "At 8:30 we said hello to Anna Hope and at 8:31 we said hello to Josephina (Josie) Faith. Anna weighs 4lbs 5oz and Josie weighs 3lbs. Melanie is doing well. Today I asked our Dr.  now that we are all done with the TTTS situation, what was He thinking when he saw us at 20 weeks. He responded almost immediately, I thought you'd lose one of them, if not both.  At the c-section the Dr. brought me over and showed me the placenta. She could see that Anna had maybe 75% of the placenta and Josie had 25%. She said that Josie didn't have enough of the placenta to support herself and if they didn't have TTTS Josie would have died. So what we have thought was the problem ended up being the life saver. "For the winter is past, and the rain is over and gone. The flowers are springing up and the time of singing birds has come.”  -Song of Songs 2:11-12

With that news, we were in awe at the Sovereignty of God!

"For you created my inmost being; you knit me together in my mother's womb, I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.  My frame was not hidden from you when I was made in the secret place.  When I was woven together in the depths of the earth, your eyes saw my unformed body.  All the days ordained for me were written in your book before one of them came to be.  How precious to me are your thoughts, O God! How vast is the sum of them!”  -Psalms 139:13-17

We thought the hard times were behind us, except life in the NICU doesn’t always work that way.  They were preemies and still had tough days ahead...

SO THANKFUL!!!





Monday morning, our little girls entered our world.  Josie (Baby B, the TTTS Donor who had too little fluid making it difficult for her to grow) was doing great.  She was breathing room air within her first 24 hours and I even got to hold her on Tuesday for the first time.  She was certainly itty bitty, 3 pounds is pretty little!


Anna (Baby A, the TTTS Recipient who had too much fluid in her amniotic sac causing Congestive Heart Failure) had a rough start.  Anna spent the first week needing some breathing help with a ventilator and then CPAP, along with several other preemie type issues.  We were anxious to see her sweet little face, without tubes, and to get to hold her.


On Saturday (at five days old), Anna was weaned off CPAP and onto nasal cannula oxygen!  I finally got to hold our second baby girl.  Her eyes were wide open and a couple times she even looked like she was laughing.  She seemed much more peaceful that day.  Then, the nurse asked if I'd like to hold both of our girls together.  YOU BET I DO!


Joy flooded my heart to be able to hold both of our little girls and to see them so close to each other.  What miracles!  

Sunday morning, I was able to go to church again.  It was the first time in months!  There is something amazing and indescribable about spending time in worship after you have just been face to face with a miracle.  When we got home from church, my phone rang.  It was one of the NICU nurses telling me we needed to come down to the hospital right away.  Anna was very sick and needed emergency surgery for a perforated bowel.  Anna had Necrotizing Enterocolitis aka NEC.  Being a Special Care Nursery Nurse, I knew this had a high mortality rate and was very serious.   I felt almost physically crushed while tears streamed down my cheeks.   After 3 months of not knowing if they would ever be born alive, I had thought we were finally in the clear.  Yet here we were again, on our knees, pleading with our heavenly Father, for His sovereign help!  We got in the car right away.  While Dan drove to the hospital I frantically called a few people to ask them to pray with us for Anna.

When we arrived at the hospital, they were prepping Anna for surgery.  She did not look good.  The Pediatric Surgeon arrived and introduced himself.  He explained what happened and what he was going to do.  When he was all done he went on to tell us that his In-laws are our neighbors.  He said he was actually sitting at their table with them, right by their front window.  They were telling him about our girls, that they had TTTS and were preemies at his hospital NICU.  Then his phone rang and it was the nurse telling him about Anna.  He said he watched us back up out of our driveway and followed us down to the hospital.  What crazy comfort that brought us in this time of desperation.   We knew this surgeon had a vested interest in our baby girl.  He took her down for surgery and I went into the pumping room.  I looked out the window and the snowflakes almost took my breath away.  They were huge and falling so soft and slow.  I felt like I saw a glimpse of hope.

Anna came out of surgery fine and ended up only loosing a small section of her jejunum (small intestine) and was left with an ostomy.



A few weeks later they were able to take down her ostomy.   We were very excited because after her take down surgery, they were able to be move our girls closer to us, to the Special Care Nursery that I worked in.  It was such a blessing to have my friends and co-workers caring for our babies.


After about two months, our girls got to come home.  We were able to close this chapter of our life and thank our Sovereign God that we were now a family of five, all under one roof, together.








15 comments:

  1. Thanks for sharing your story. It's so heart wrenching, but joyful. What an amazing miracle.

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  2. I was a preemie myself, 1 lb. 12 oz. in 1961,and although I have a few health struggles, God has been faithful to meall my life. He is still a God of Miracles, as is quite evident in reading your story. God Bless you all.

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  3. This is a beautiful testimony of God's faithfulness. Thank you so much for sharing. It bolsters my heart in innumerable ways to read this.

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  4. Great story- thanks for sharing this incredible journey.

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  5. Thank you for sharing your story and your heart! It has encouraged me because we have similar stories. We have a 21 month old boy and I am currently 19 weeks and 6 days pregnant with monochorionic diamniotic twin girls. They were diagnosed with TTTS at 16 weeks and it has been a hard journey since. Because the babies weren't close to being viable, we went ahead and did the laser surgery with the babies at 17 weeks. It was a very hard to decision to make but we put it all in the Lord's hands, knowing that these are His sweet baby girls and asked Him to help us make decisions and be at peace. We found out a week ago at our first ultrasound a week after the surgery that the girls were not doing better as the Dr. had hoped, but they weren't doing worse either. Dr. thinks he didn't get all the vessels between the two disconnected but felt he got enough to keep them semi-stable.

    The Dr. has been monitoring the babies every 2-3 days seeing how they're doing. Baby A is slowing getting more fluid again (Baby B is the donor and Baby A is the recipient). Her heart seems to be doing a little better and not working as hard, but Baby B is still stuck to the amniotic wall because of lack of fluid and her bladder is still not visible. The Dr. also found a week ago on ultrasound that there is a late complication from the surgery: Baby A's inner lining of her amniotic sac has ruptured and she has chorioamniotic separation. The Dr. was wanting to go back in to do the surgery again and disconnect the vessels but cannot now because of this separation. We are so thankful though that none of the amniotic membranes are sticking to Baby A anymore as of yesterday (there had been pieces stuck to her - kind of wrapping her up) which could cause constriction on her extremities and organs. This is a huge praise that she is free from the pieces!!

    Dr. is hoping to inch our way to viability at 23 weeks (3 weeks away) and give me steroid shots to get their lungs developing faster. If babies are still stable at 23 weeks, then he will keep pushing as far as he can until they're delivered. Currently though because of the slow fluid gain for Baby A, it is starting to make me uncomfortable and I will need an amnioreduction soon to buy some time until they're viable and beyond.

    This is a hard journey as you know because you have traveled down that road. We are so thankful though for God's goodness through all of this. He has a good plan for all of this. Thank you again for sharing your story and your heart. It has encouraged me! I plan on sharing it with my Husband tonight :) God bless you and your family.

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  6. Such a hard thing to go through. Glad you had your faith and could lean on it through it all. They are beautiful little miracles! You are so blessed in so many ways and the beauty of it is you know it! God bless and keep you all!

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